Listening to the Body after Aortic Dissection: A Participatory Sound-Based Co-Creation Project

Survival after acute aortic dissection (AD) has improved substantially, shifting attention to long-term recovery. Although reduced quality of life and psychological distress are documented, less is known about how survivors experience their bodies after a life-threatening event. We developed After the Storm, a participatory sound-based cocreation project, and examined experiences of bodily awareness, vigilance, sound, and silence emerging during codesign.

This qualitative study was embedded within the codesign phase of After the Storm. Twenty-three survivors of acute AD participated across two cocreation sessions (an initial group of 14 and a second After the Storm session of 9). Data generated throughout the process, recruitment responses, follow-up correspondence, workshop discussions, reflective conversations, listening exercises, and field notes, were analyzed using reflexive thematic analysis.

Participants described recovery as extending beyond physical healing, involving a fundamental change in their relationship with their bodies. Five interconnected themes emerged: (1) a body that can no longer be taken for granted, (2) living in vigilance, (3) the invisible burden of recovery, (4) sound, silence, and recognition, and (5) rebuilding life after the storm. Participants reported heightened awareness of bodily sensations, persistent attentiveness to physical signals, and difficulty communicating recovery to others. Many felt strong recognition in the focus on listening, sound, and silence, capturing aspects of recovery difficult to articulate clinically.

Recovery after AD involves dimensions of bodily awareness, vigilance, and meaning-making not fully reflected in existing clinical frameworks. A participatory sound-based codesign process offered a novel space in which these experiences could be explored, shared, and recognized, suggesting arts-based approaches may capture aspects of survivorship that conventional patient-reported outcomes miss.